That would be a good way to describe life around here the last several days.
We took Parker up for his GI testing last week only to discover that things hadn’t been scheduled properly for both tests. So we get to go back up yet again on Monday to have the second test performed.
After informing me of THEIR screw up, PCMC then pulled out a bill from Parker’s last GI visit and asked if perhaps NOW I could FINALLY pay them.
I told them to get in line. And to be forewarned because this was ONE VERY LONG LINE.
These trips up aren’t fun. They are stressful. And they are expensive. Very expensive. And I can’t put the gas for these trips on a credit card or payment plan. That is money I need to have upfront.
Last week’s testing showed that Parker is aspirating on liquids thickened (slightly) with the barium powder. He is going to need a feeding specialist to help with this issue.
And of course our insurance won’t touch a feeding specialist. And our school district doesn’t provide any kind of therapies to help with feeding problems.
Even though Parker is g-tube fed, he still needs to learn how to drink out of a cup and suck from a straw. Because of the aspiration issues he will need a feeding specialist to work with him to help him gain these skills. He can begin again with level one baby foods. But he needs to be under the care of a feeding specialist for this as well.
I am looking at over $50.00 a session out of pocket here. Yeah. That would be PER SESSION. I have no idea as to how to swing that.
For a split second Reed and I were feeling pretty good thinking that our Economic Stimulus check from the government would be able to pay off a few bills from Primary Children’s hospital.
Then we got hit with a new bill of almost SEVEN THOUSAND DOLLARS that we were totally not expecting.
And then there will be the bills from this up and coming surgery that Reed and I are anticipating.
Did I mention stressful?
My Mom mentioned that perhaps one way to help raise money for Parker’s needs would be to follow in the footsteps of some of my friends and sell a few things from Parker’s site.
A good idea, but I’m not sure what to sell. Or how to find the time to make the items to sell.
We’ve brainstormed having another Fund Raiser. In the past we’ve been so very careful with Parker’s donations from Fund Raisers and have been able to cover many, many of his needs this way.
These funds have literally been lifesavers. Very humbling lifesavers.
Parker’s Yard Sale from two summers ago was simply amazing. And very successful.
But it kind of takes a bit of a village and some very sweet friends and neighbors to pull off a successful Fund Raiser. Lots of time and planning go into these events. And I have no idea who may be willing to donate this kind of time and energy. It is a lot to ask.
Yeah. Stressful.
But our Brave Hero is so very worth it.
Waiting to be ‘sprung’ from his crib this morning.
Total Joy! That is what this kid gives.
Tammy – I wish I lived closer to help pull together a garage sale… I’m a pretty awesome garage sale organizer, if I do say so myself
I wonder… could you ask people to participate in an online garage sale? Like eBay… you could have people sell things and then donate the money to your Special Needs Medical Fund?? Just a thought…
Blogher ads. You fill out a form and they put ads on your site and mail you checks every month.
Melissa,
I wish you were out here too!
I would put your expertise to good use.
The online garage sales sounds fun. But I’m clueless as to how to organize something like that.
My mind is kinda stuck in ‘Next Surgery Mode’. I so wish it were stuck in ‘Upcoming Vacation to Bermuda Mode’…..sigh.
Wiz,
Do Blogher ads really pay anything? I’ll have to look into how that works. Clueless is pretty much my middle name these days.
Hugs Tammy – I’m not a very good organizer for anything – definitely not in my genes – unfortunately
Just come over and see the mess I’m in – ughhh!
I’m so sorry about the unexpected bill – that totally sucks
But boy does that last pic of Parker’s smile totally ROCK!!! Your sweet boy just brightens my day!!!
i think of your family every day. we just got back in town and i was planning on giving you a call when i get back in the swing of things! Wishing the best to you guys!!!!
Twitter: livingingrace
says:
Darn. If we had more than one car running right now, I’d drive up in a heartbeat to help. Because believe me, I totally get the stress of the medical bills. All too well. It’s to the point now that I can’t go active for the list until we can assure them we have the funds set aside to get there in a minute’s notice and stay there after for a month.
It sucks.
But, I’m praying for a solution for you and will put my head together and think. If we could figure out the online thing, I could coordinate it for you from here. That, I could do. I’m a master event planner and organizer extraordinaire.
Don’t hesitate to ask me to help when you need it. There has to be a solution somehwere. We’ll find it.
I am more than willing to donate items to sell or as prizes for raffles to help raise funds. An on-line raffle might not be as hard as an actual sale. I can’t help with a garage sale but I am ready to help out with something on-line!
Hey Tammy… Granted it wouldn’t bring in a TON of money (you can only earn up to $500), but I think you should consider putting a “Revolution Money Exchange” link up in your sidebar and having people sign up under you. I’ve done it myself and already made $50 signing up (I signed up my husband too) and $20 having others sign up under me through my dietcokeandzingers blog… The money is already in my checking account!
It’s a win-win situation for you and the people that read your blog… I’m guessing you’ve already heard about it through the PYP website we both use, but if not, maybe you could check it out on PYP!
If you are considering another fund raiser, you might try and contact Rob Gardener of Spire Music (www.spiremusic.org). There are in the Salt Lake area and do performances at the Tabernacle. I believe many of their performances are free with donations accepted – maybe they can do some special ones for you guys…
His music is fantastic and I am sure they get great turn outs to their performances.
Best of luck!!
That should be ‘They are’ not ‘There are’.
TOTALLY worth it.
We’re praying.
I comment irregularly, and we have never really communicated, but I read about Parker every second there is an update. I haven’t much to offer but prayers however I think I have an idea for a fundraiser that I will start up this week. I’ll post all about it on my website and any funds raised from this project I will send directly to you for Parkers Medical Funds. Whatever I can gather, even if only a small amount, would surely help a little. I’ll try to get the details up tmrw so keep checking and send people my way.
Everything will work out, I am sure of it.
I think anyone would be stressed from all of that! I’m stressed from reading it! Wish there was more that I could do to help; but I’m praying!
Fundraiser has begun, come take a look!
Oh my gosh!! Waking up to that precious smiling little face every day would just make my day!!! Parky you are the world\’s sweetest living doll, that is for sure!
Tammy, I wish I could come and help you with a yard sale and things! If there is anything I can send you to help or to sell, PLEASE let me know and it is done in a heartbeat. I would love to pay off some of your bills and help with gas and the feeding specialist. I will keep praying and keep trying to help you in the little ways that I cant. I love your family so much and just wish SOMETHING could happen to help! I am so sorry you have to live in so much stress. Please let me know if there is anything I can do.
Love and hugs to all,
Amy
Amy, THANK YOU for all of your love and devotion to Parker. Your gifts have meant more than you could ever know. And your prayers…..please keep them coming!
Tammy,
I just put a sale in my shoppe for Mother’s Day. I thought maybe if I lowered my prices, people might buy more? I know it sounds stupid but I am just trying anything I can.
Love you,
Amy
Yes, he is so very worth it!
Will keep praying for you all!!
I’m not a feeding specialist when it comes to kids, but I’m shocked that the speech therapist working with Parker (you guys do have a speech therapist, right?) didn’t put feeding on as a goal in therapy. If your SLP does not feel comfortable putting a feeding goal, you need to find yourself another SLP.
What thickness is Parker on–nectar, or honey thick? It’s possible that thickening his liquids to honey thick would solve the aspiration problem (and is probably the first step any therapist would take anyways). The hard part comes because thickened liquids are pretty bad, and kids (well, adults too) hate them, which causes them to drink less, which causes dehydration, etc, etc, so it’s always a bummer to have to thicken to honey thick if the liquids don’t come pre-thickened (I imagine you are thickening them with Thick-It, right?).
You probably know this, but one way you can tell if he is aspirating is to suction him immediately after he swallows. If you pull stuff up, you know he is aspirating. Since it’s hard to tell if he is aspirating liquids, add a little bit of blue food coloring to the liquid he is swallowing (and start with WATER, as that is the safest thing for his little body to aspirate) and suction after he swallows. Again, if you come up with blue dye, you know he is aspirating.
I don’t know how well Parker is at following directions, and I don’t know what therapies you are doing with at home, but there are some simple exercises that you can do with him that can help his swallowing, which has the extra added bonus of strengthening his speech muscles. If you are interested in any of them, email me at heather at mormonmommywars.com, and you and I can chat. Like I said, I mainly work with adults, but the anatomy is the same, and maybe I can help save you 50 bucks
I’m here for WHATEVER. You know that, right? Email.
I can’t even imagine the shock of getting an unexpected bill for $7000 Tammy. That would put me right over the edge.
Take it from me…the biggest challenge, if you do decide to make things to sell from your site, is finding the time to make everything. I thought it would be easy. I didn’t factor in a very wide awake newborn five days a week. The child waits until she goes home to sleep. Sigh.